We're just a regular family dealing with some extraordinary circumstances! Bryan & I married in June of 1999. We welcomed Zachary in September 2007 and Eli in October 2010. Eli was diagnosed with multiple heart defects when he was only 10 weeks old. We've been blessed in so many ways and despite the struggles we're a very happy family. We chose the title "With Every Little Beat..." because we've come to realize what a gift every moment truly is.

Tuesday, May 28, 2013

Day 41, Post Op Fontan (May 28)

Today's been a very up & down kind of day. Eli woke and wanted to walk so we played in the play room. While in there he pooped! I took him back to the room and changed him. His breakfast had arrived so we ate together. I didn't push for him to eat because he hadn't been eating much due to the constipation. He asked for and ate two bites of scrambled egg with ham bits and a slice of bacon along with drinking two ounces of juice. That took 30 minutes. A little later he threw up. :( He was resting in bed when therapy came by to see if it was a good time to try some PT. At first I said no but Eli started being silly so we asked him if he wanted to play. He immediately said "Shoosh" (shoes) and started to sit up. We took that as a yes!

The therapist knew he was having belly issues and is only 4 days post op, so she was planning on just following his lead. His lead included playing basketball, bowling, climbing some therapy stairs, pushing a shopping cart, going into the stairwell and climbing a full flight of stairs, coming down said stairs, and pushing a shopping cart (with Pablo inside) the length of the hallway. When he stopped and wanted held, I said I couldn't push him to do more and she was shocked at how much he wanted to do. Before we got back to our room, transport had arrived to take us to radiology for his chest x-ray.

We got back to the room and sat together on the couch. I thought he might fall asleep in my arms, but he said he wanted to walk. We went out to the playground for a long time and enjoyed hiding from each other. Sara (surgical NP) found us out there and checked in on Eli's weekend. She hadn't seen him since before the plication and probably had hopes that his drainage would be less and/or he'd be off the oxygen.

After we got him back to the room he finally took a nap. I slipped out for an hour and came back just as he was waking. It was 2pm by then and I hadn't ordered him a lunch tray because of how his stools and belly had been. He ate some Goldfish crackers and jello. The nurse came in and we gave him a bath. At home, he loves baths. Here, not so much. He screamed at us the whole time but, as usual, as soon as it was over and I was dressing him on the couch as the nurse changed the sheets, he was fine.

Sara & the unit's hospitalist came in to talk while I was lotioning him and getting his clothes on. Eli's chest x-ray actually showed more fluid in his chest. It's above the area that his JP drain is reaching. Because he'd been up and active prior to the chest x-ray, we can't really even entertain the thought that gravity will "pull" it down. Dr. Abraham is aware and will let us know what he wants to do. He was in procedures all day. Sara said he may get with us tonight about what he wants to do or he may sleep on it and we'll know more tomorrow. My suspicion is that they'll have to place another chest tube, but that's me guessing.

I told you the details of our day just so you understand what I meant by "an up & down kind of day." He played a lot and did very well, but he's also still somewhat constipated, threw up because of it, and has a lot of fluid in his chest. I'm mad, annoyed, sad, getting disheartened, etc. I'm not any of those things at anyone, just the situation. I feel like we're doing everything we are supposed to and his body is still not responding right. I get that every case is different. I know the doctors and nurses are almost as frustrated as we are. I'm just getting tired of making lemonade with all the lemons we've had. Thankfully, the things that are happening aren't really going wrong, they're just not going right.

We'll be okay. I'm just having a moment! Please pray for Eli's chest fluid to magically/by the grace of God clear up & never return! Pray for that to lead to increased oxygen saturation levels so we can go home without oxygen! Pray that we all stay strong for each other and get through this long trial. Thank you.

Most children suffering from congenital heart defects don't look sick. You can't tell them apart from other kids, but their scars are very real. Most have faced more in their short lives than any person should. Beneath their shirts are battle scars, constant reminders of their battles to live. They have a strength, courage, and resilience that we can only be amazed by. Show our kids they are important, that their hearts matter. Support CHD awareness and research!